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Alice Wong, a visionary leader in disability justice and culture, died from an infection on November 14 in San Francisco. She was 51.

In a message shared on social media by friend and fellow activist Sandy Ho, Wong wrote:

“Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more.”  

Wong is best known for her work on the Disability Visibility Project, which she founded to magnify disabled culture, particularly the work and lives of those who are multiply marginalized: Disabled women of color, LGBTQ+ people and immigrants. 

Wong was born on March 27, 1974 in Indianapolis. Her parents, Henry and Bobby  Wong, had immigrated to the United States from Hong Kong two years earlier. She was diagnosed at birth with spinal muscular atrophy, a progressive neuromuscular disease that slowly weakened her muscles, including the muscles in her lungs that she needed to breathe. Doctors told her parents that she wouldn’t live past 18.

As her disability progressed, Wong acquired more mechanical support. She conceptualized herself as a “disabled cyborg” and the advancement of her condition as “cyborg turning points” in her 2022 memoir, “The Year of the Tiger.” 

“I am a disabled cyborg that has gone through another series of augmentations that extended her life until another system fails,” she told The Guardian earlier this year. 

One of Wong’s more recent cyborg components was the use of text-to-speech software, after she lost the ability to speak. She became an advocate for people who use augmentative and alternative communication through her work on the advisory council for CommunicationFirst, a nonprofit dedicated to protecting and advancing the rights of nonspeakers, as well as others who cannot rely on speech alone to be understood.

In 2013, then-President Barack Obama appointed Wong to the National Council on Disability, an independent agency that advises the federal government and Congress on disability policy. In 2015, she became the first person to visit the White House by robot telepresence, as she was not able to travel, to celebrate the 25th anniversary of the Americans with Disabilities Act. 

The Disability Visibility Project began in 2014 as an oral history project in cooperation with StoryCorps, a nonprofit that collects, preserves and shares stories of everyday people. Over a hundred interviews are now housed at the Library of Congress. 

She wrote multiple books, a column for Teen Vogue and more. One of her final projects was Crips for eSims for Gaza, which she co-founded with writers Jane Shi and Leah Lakshmi Piepzna-Samarasinha. They raised over $3 million to help connect people living in Gaza to the Internet and the rest of the world. 

In 2024, Wong was awarded a MacArthur “genius grant” for her contributions to disability activism and culture. That same year, Wong wrote about turning 50 for Time. The average lifespan for someone with her condition grew throughout her lifetime as new technologies and treatments emerged, but she was aware she had limited time from a very young age. According to Wong, it shaped the way she lived.  

“Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, and full of love,” she said. 

In addition to her parents, Wong is survived by her younger sisters, Emily and Grace Wong. 

Disclosure: Sara Luterman completed a contract to write a plain language edition of Alice Wong’s first book in 2019.